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Tuesday, November 19, 2013

I've been wanting to write this post for a while. But I really wanted to use the DAS multiple times before posting about it! I want people to know that it's totally doable, and give some tips on how to make the most of your trip!

Let me first say that this is for Disneyland, resort, and Disney world will be a bit different!

First off you go to city hall, same as with the GAC. Here's your first tip...city hall can have a long line if its a busy day. If your visiting both parks. Get your DAS at California Adventure. The line at their city hall tends to be much shorter! They have extra staff at city hall to try and make it go faster. They use iPads for the DAS and we've even gotten our pass while standing in line! They will also want to see everyone in your party, so keep everyone close! This eliminates people getting the max people in and bringing more friends or letting other people come with them!

Ok, if all you need for your child is the ability to leave them in their stroller in line, then they will simply put a red tag on the stroller, showing its to be used as a wheelchair. This is what they already did in Disney world. Just so you know if you only tag your stroller, you still have to wait in lines that are handicap accessible, which is most rides in DCA (Disney California adventure)

If your child has sensory issues, and can't stand in long lines, then you can get the DAS. (You can also tag your stroller along with the DAS) They will take your child's picture for the card. On the back is spots for them to give you times for each ride. One big misconception I have to explain is....you don't have to go directly to each ride for a come back time! People keep saying, we go to the ride and my child doesn't understand that we have to leave and come back. No, that's not how it works! There are kiosks set up around the park, and they will give you a paper telling you where the kiosks are. Any kiosk can give you a time for any ride! City hall is also a kiosk. Before you leave city hall they can give you your first come back time. They take the wait time for the ride, and subtract 10 minutes. We've only had one wait time over 30 minutes, and that was Small world at christmas time! Usually by the time I walk to the ride, it's our come back time! Use this along with fastpass for rides that have it. Don't get a come back time for a ride that has fastpass. You can use both at the same time! For rides that the line is shorter than 10 minutes, you don't even need a come back time, just go through the typical handicap line or exit. It's better to plan your day, which is smart anyway for a busy park! Get come back times for rides that tend to have long lines! Most of the rides in fantasyland, with the exception of small world and Peter Pan, you can just go through the exit like normal, no need for a come back time!

I'm still seeing people abuse the pass, but not nearly as much. The best part, the lines in the handicap line are much much smaller! Remember the line at pirates of the Caribbean? How bad it could get? No more! We still have to wait longer on some rides to get a handicap vehicle. That's if your child stays in their wheelchair. This time of year Haunted mansion and small world are busier for wheelchair bound people!

My biggest advice....be polite! If you walk in to Disneyland with an already bad attitude, not only is the staff going to be annoyed, but your already ruining your own day! Always remember life is what you make it! The staff is more than willing to help, as long as your polite to them as well! If you happen to get a really rude cast member, take down their name, Disney does not tolerate that in their cast members!

Also if for some reason the pass is simply not working, go back to city hall and let them know, they will help you! Again, if its not working and you go back to city hall for help, BE POLITE! Even if your frustrated that its not working, screaming at the staff is not going to help anyone!

And lastly, give it a day or two to really get the hang of it. Don't say after a couple hours it's not working. Even I, as someone who was telling people to just try it, was frustrated on the first day! I was already having a bad day, Jax J tube was leaking like crazy, and our suction was not working. Add in a new system and I was totally overwhelmed! But its a breeze now, and now that the staff is used to it, the kinks are working themselves out, and things are running very smoothly! If someone tried it during the first few weeks it was out, and they are saying its a disaster, they haven't given it enough time! It's really not that hard, and I don't feel like its any worse than the previous system, and now you have the added bonus of much shorter handicap lines and less abuse!

If you have any more questions or I left something out, leave a comment and I'll answer it!

You know that we'd go to Disney even without a special pass! It's still a place that Jax can be like everyone else! It's a magical place that makes us all feel special, and the way the staff treats our littles will keep us going back forever! After all, Arina is the Disneyland princess! Just ask the cast members!

Sunday, November 10, 2013

Munchkin is home again! Tomorrow will be day three home and we are still a bit on edge as that's the max days he's been home in a month!

His port was positive for enterococcus, and to save the port from being pulled, he is on 24/7 IV antibiotics through it. They were concerned about endocarditis because I guess this particular bug is prone to causing it. He had an echo, and then a trans esophageal echo and luckily both were negative!

The bad news is the tpn and antibiotic are not compatible, so we had to have another line placed for his tpn. So he's currently at home with two lines, running two different meds. Needless to say he's a lot of work right now! The tpn runs for 16 hours, then we run 8 hours of IV fluid in between. That runs through a popliteal line behind his knee. The antibiotic runs 24/7 through his port. The good news is we do think that the J tube site will close on its own. Nothing is leaking from there anymore, and the surgeon is giving it two more weeks to completely close, and then we'll start feeds again!

All I care about is that my baby boy is home where he belongs! We can do anything he needs to keep him here!!

Sunday, November 3, 2013

Cultures from his port are positive. Today they drew peripheral cultures, and we may be getting an echo to check for endocarditis. The fact that he continues to spike fevers, well they don't like that at all!

We need the cultures to come back negative and this infection to get under control so we don't lose the port! That would be bad!

This is the third stay this month, we're just hoping third time is a charm and we can enjoy the holidays at home!

Friday, November 1, 2013

He is still on tpn and lipids, hoping his j tube will close on its own. It's still leaking, and I think if it hasn't closed by now it's not going to!

His skin is totally healed around the site, and they are using an ostomy bag to keep track of how much drainage comes out. Thank goodness we got the port placed when we did, because putting a central line in is impossible, which is why we did it to begin with. See mommy really does know best!

I'm just glad we got to take him out in his costume! And next time we hit Disney its going with us as we'll, since our Disney friends missed it at the Halloween party!

We hope to get some better pics today with the good camera, but they looked adorable and were the talk of the school!

Read about our adoption journey here!

Jaxsons story

About Me

Jaxson was born on Nov.20 2005 with Trisomy 21. He has spent half of his short life in the hospital. He has heart defects,pulmonary hypertension,severe reflux,sleep apnea, and a hypoxic brain injury that resulted in severe siezures.This is his journey.